Every word in this article rings true. I spend most of my day with adult yoga students who are considered “profoundly autistic”. To my eyes, the ways that they explore and engage with the world look like scientists conducting mini-experiments, artists studying their subjects and poets re-working language to point to deeper truths. They are brilliantly self-contained and self-directed. And when they deem you worthy of connecting with, the relationships they develop are deep, loyal and true. They are sorely underestimated and under valued.
Here is where I get concerned: Until we are ready to shift away from our rigid neurotypical systems that rely on contributing to the capitalist bottom line to survive, autism is disabling. Funding for supports like community-based housing and day habilitation is essential.
Help me visualize a future where my autistic students can thrive and get all the supports they need without relying on medical diagnosis and insurance.
Thank you for this! I hate the DSM V and the idea of autism as a disorder. Mottron's idea of autism as an alternate developmental path (bifurcation) like left-handedness or homosexuality makes a lot of sense.
Autism IS a disorder though, neurologically, scientifically, provably. I can say as an autistic adult it can be profoundly disabling. I hate the idea that neurotypicals speak like this on behalf of me, and people like me. Sure, we can consider it an alternative development path, but we MUST keep in mind that ASD and it's plethora of comobidities can be, and often are, intensely disabling at times.
I'm a late-diagnosed autistic. I've also been diagnosed with anxiety and depression, though I consider the anxiety and depression more situational. I agree that autism can be disabling. Some comorbidities, like apraxia (and others) make it very much so.
Everyone is so different and our experience of autism and life is so wide ranging it's hard to saying anything at all about autism without being wrong somewhere. Having said that, I don't personally consider autism a disorder.
Recently, my autism therapist framed my communication issues, which are not insignificant, as a deficit. I said I thought of it as a difference. Conversation is a problem. Writing is not. I can talk if it's one-way only and remote, though not always easily. Back and forth is an issue even with a trained therapist.
Did I make the choice to write, instead of converse, at some point in my development or was I neurologically wired to be that way or is it some of both? I'm not sure, but it’s interesting to think about. For me, however, the bottom line is that neither option (or any other) makes my neurobiology in any way disordered.
Obviously, this is just my personal perspective. I have other autism related issues and there were times when my life was awful. I was able to step away from certain things and create a quiet life that works for me. I am aware that not everyone has that option.
Oliver Sacks still has my favourite explanation: Apple trees can spontaneously throw out unique branches that grow different apples than the rest of the tree. These branches are called ‘sports’.
Sacks saw people with autism as sports of the human race.
I don’t know. I haven’t read his stuff for quite a while; I’ve kinda fallen out of touch with the field. I will say though, early in my career it was very helpful to read his views on things, he had perspective.
He had a profound respect for other human beings, and it made him a great clinician. People like this are rare but if we had more in medicine it could make a great difference.
I'm so grateful to you for writing this Pascale, and feeling incredibly fortunate to have found it as it articulates something so strongly and wonderfully. I have recently been encouraged to seek an ASD diagnosis for my wee son, and while I have known he is "different" since he was about four months old I understand his exploration of the world almost word-for-word as written. He's smart, very relational and curious, but the way he explores the world and learns is ... different. As you say.
I've been inherently suspicious of the framing of ASD as a superpower or gift, as it's hard to exist in the world when you experience things differently for the norm and it feels like "toxic positivity" in a way. But "bifurcation", as you explain it, feels like a useful and resonant concept. Thank you, thank you.
Hello, dear readers! Thank you for showing interest in my writing. I am humbled by so much support and “likes” …
Can I ask something, though?
Don’t forget that most people who read my posts are sensitive to many things (lights, sounds, clothes labels. smells, people chewing gums…. ) and that they also may be sensitive to blunt or harsh comments.
Don’t forget to be courteous.
Be sweet, kind and gentle. The world is already so harsh, violent and chaotic…
Let’s make this space a safe, quiet and happy space.
Lots of love 💜🩷💜 and thank you for your patience with me (I am a very slow writer!)
It's called being an Introvert and it's a good thing. If I were a child now, I would be labeled ASD....and I'm NOT! I'm an introvert and I have solo likes and hobbies that make me unique. I don't like being in crowds and prefer to have a few close friends....quality over quantity. I'm not a genius, but I am very "bright". I'm Normal....I'm ME. I find the extroverts trying to tell me (and others) that something is wrong with my personality is offensive. Different strokes for different folks. Everybody wants a "label" and there are parents who want an excuse for when their child doesn't conform to "the standards" of society. Maybe something is wrong with "the standards"?
Yes, I do think that there is actual autism! Those people need lots of care from infancy though adulthood. What has happened is that their care and suffering is now minimized because of people (or parents) self diagnosing (or seeking) into a category. Why must we mis-diagnose normal behavior?
Your opinion is wrong & incorrect. I’m in a household of all autistic people, some introverts and some extroverts. Autistic traits are distinct. Typically developing introverts don’t look like autistic introverts. When you say everyone wants a label you erase the experiences of people you don’t truly understand. Oh, that label often comes with a two year waiting period, multiple medical referrals, at least 4 standardized tests, multiple interviews and a whole lot of social distress and stigma like being asked to leave schools because you are a “problem”. It’s not “I don’t like crowds”. Stay in your lane.
Holy heck yes. Yikes. It’s funny I came across this after finally building the courage up to share my messy perspective on how debilitating late life dx is. I’m incredibly grateful but it is disabling and all consuming
Nothing you have said indicates that you would be diagnosed autistic and you are very loudly wrong here at a time autistic people are under attack.
It’s absurd to speak so confidently about your astoundingly common traits being autistic. No one goes “seeking” for the hell of it. It’s a debilitating process to go through later life diagnosis. I even looked into it and didn’t think I was such is the extent of societal ignorance around high masking autism.
But it answered some huge issues for me and I’m now paying the cost of a life time of suppressing autistic traits. It’s a serious issue for many 1000s women in particular. And it sure as hell doesn’t look like being an introvert.
Your "identity" is so connected to a "diagnosis" that anything said against it seems like an existential a threat to you. Maybe you need to go back to the Blue Cry echo chamber?
What a strange and unkind thing to say. I am nearly 50 years old. I wasn't in need of an autism diagnosis to give my life meaning babe. I've done plenty with my life.
And fwiw I have an actual diagnosis, much as I believe self diagnosis is completely valid. Its really a strange take to come in so confident and wrong and then be so rude. Literally nothing you have referred to is even close to autistic traits, so why would you be diagnosed? You have a shallow understanding it appears?
I completely agree that autism is a difference in brain (and body, since there are many co-occurring physical differences for ND people) developmental path. However, I don’t know that I agree with Mottron’s exact ideas…I would need to investigate more deeply. Whatever the answer is in the end, autistic people still experience a disabling existence within our typical society.
I'm with you on this. There are some people who are autistic who are very clearly disabled. My brother-in-law is one of them. He was born with the cord around his throat and lost oxygen to his brain. None of us believe that he feels any empathy whatsoever, as he has never shown signs of it. I often wonder if there needs to be a bifurcation between more traditionally "functional" autistic folks (not the right word, per se) vs the ones that are legitimatey disabled. I know a few autistic friends who get very angry when people use the "differently able" phrasing. It promotes the false idea that they could learn to be better when sometimes, like in the case of my brother-in-law and others, it is not possible.
There is the old language to describe autistic people with low support needs (Asperger’s), but it’s so riddled with nazi connotations that it’s not worth using anymore. And instead of functioning labels, most people are converting to using specific examples of support needs.
E.g. some autistic people need support with communication and use AAC devices. Neither of my children uses an AAC device, but they both have periods of time when they are non-speaking and need support and understanding. Both of my kids need support with emotional regulation and are home learners because traditional school is not designed for their nervous systems.
Because each autistic person needs different levels of support in different areas, I don’t think we can ever have meaningful “categories”.
In the end, ALL human brains are different and need different supports at different times. Some need more support at all times.
Ultimately, that's the point of the "spectrum," right? It goes to show that different people have different needs. And some people have literal brain damage, so...
One thing I can't abide by is the people who say "we're all a little autistic." Nope, definitely not. That's another way of diminishing the truth of autistic life. It's not the same.
I am a psychiatrist, and to be honest, I could not tell you the diagnostic criteria for ASD. Partially, this is due to the fact that I entered Child and Adolescent psychiatry accepting already diagnosed children in the clinic of a large medical center, and decided to learn from them in conjunction with what I had been taught. The first lesson, however, came from a nurse practitioner who said they are "special" and have "super powers." When I asked for clarification, she smiled and said, "You'll see soon enough." I quickly learned to let them sit in my chair while I sat on the couch, as we played card games and talked about "problems." These usually were about having few friends, feeling lonely at school, sometimes being bullied or made fun of, etc. We devoted a lot of time to planning "strategies" to address these issues, celebrating the accomplishments, and processing the mistakes; role-playing, laughing, high-fiving, and me passing out tissues & reassurance. I decided to attempt a group, gathering six, and we would watch short movies to stimulate discussion, or do art work with the expressive arts therapist, listen to music, or just talk. They even occasionally met outside the clinic with parental supervision. I undoubtedly enjoyed the time we spent together as much as they seemed to enjoy it, and I never, ever expected to be inspired by their creativity, their insight, and their respect for one another. Eventually, I had to leave the clinic, and I was was unsure how to tell them and how to actually make the break so I sought the direction of staff. I settled on a "transitional gift" e.g. one young girl loved a rock star that I, as a guitar player, had seen and been sent several guitar picks, so I put one on a chain for her; another boy loved military battle ships, so I got him a deck of cards with battle ships on the back, etc. I introduced them individually to their new clinician, and they looked at me with such sadness, some saying, "You can't leave," or one said, "You're my only friend." They laughed & I laughed, they cried & I cried, and I have never forgotten them. My message to my colleagues is that, we are all taught - frequently by the best and the most learned in our respective fields - but I encourage you to set the books and lectures aside and be vulnerable enough to really learn from these children & adolescents as your best teachers. Actually listen to them, and likewise their families. You will never resolve all their issues, but you will forever be a better advocate and clinician, and more importantly, a better person for having done so.
This is wonderful! I agree, and it's how I have viewed it since my own late diagnosis at 65- nine years ago. I am sharing this as fast and as far as I can. Thank you, Ms. Larivierre!
Psychology gets basically everything wrong and what they get right they have no idea how to treat or manage. It’s a pseudoscience responsible for more atrocities than I care to recall.
I’m curious whether the original article addresses the way this perspective could be (and has been) used to blame parents, particularly mothers, for raising their kids in such a way as to result in autism. Or if you have your own views on it.
The relief of discovering neurodevelopmental differences is that parents are not generally blamed for their children’s autism anymore. What are your thoughts?
Thank you so much for posting this. It reinforces up much of what I intuitively knew 26 years ago. Felt like a translator for my son in his “early intervention education” program in our local public school. It’s exactly this approach - that there is something wrong with a child if they aren’t typical that must be identified, treated (and cured) that is so harmful.
But at one time left-handedness was abhorrent also. At least we lost the superstitious “sinister” label, (except in eye prescription scripts).
Follow the money. The explosion of autism diagnosis (and autism service industrial complex) is tied directly to special education dollars. It’s not helping, but often hindering students in school, when implemented from this perspective. I hope one day that this will be reversed and all students will be recognized for their added value and intellectual and artistic assets they bring to our world.
Yes, it does. It used to be considered ‘of the devil.’ I was referring to that time in history. And those backward people as superstitious. An imperfect description.
This is entirely relatable to me! (autistic person and mother of an autistic child). We always say we have a different operating system, like Linux instead of the mainstream Windows. I recognise every point made here.
Every word in this article rings true. I spend most of my day with adult yoga students who are considered “profoundly autistic”. To my eyes, the ways that they explore and engage with the world look like scientists conducting mini-experiments, artists studying their subjects and poets re-working language to point to deeper truths. They are brilliantly self-contained and self-directed. And when they deem you worthy of connecting with, the relationships they develop are deep, loyal and true. They are sorely underestimated and under valued.
Here is where I get concerned: Until we are ready to shift away from our rigid neurotypical systems that rely on contributing to the capitalist bottom line to survive, autism is disabling. Funding for supports like community-based housing and day habilitation is essential.
Help me visualize a future where my autistic students can thrive and get all the supports they need without relying on medical diagnosis and insurance.
Thank you for this! I hate the DSM V and the idea of autism as a disorder. Mottron's idea of autism as an alternate developmental path (bifurcation) like left-handedness or homosexuality makes a lot of sense.
Autism IS a disorder though, neurologically, scientifically, provably. I can say as an autistic adult it can be profoundly disabling. I hate the idea that neurotypicals speak like this on behalf of me, and people like me. Sure, we can consider it an alternative development path, but we MUST keep in mind that ASD and it's plethora of comobidities can be, and often are, intensely disabling at times.
I'm a late-diagnosed autistic. I've also been diagnosed with anxiety and depression, though I consider the anxiety and depression more situational. I agree that autism can be disabling. Some comorbidities, like apraxia (and others) make it very much so.
Everyone is so different and our experience of autism and life is so wide ranging it's hard to saying anything at all about autism without being wrong somewhere. Having said that, I don't personally consider autism a disorder.
Recently, my autism therapist framed my communication issues, which are not insignificant, as a deficit. I said I thought of it as a difference. Conversation is a problem. Writing is not. I can talk if it's one-way only and remote, though not always easily. Back and forth is an issue even with a trained therapist.
Did I make the choice to write, instead of converse, at some point in my development or was I neurologically wired to be that way or is it some of both? I'm not sure, but it’s interesting to think about. For me, however, the bottom line is that neither option (or any other) makes my neurobiology in any way disordered.
Obviously, this is just my personal perspective. I have other autism related issues and there were times when my life was awful. I was able to step away from certain things and create a quiet life that works for me. I am aware that not everyone has that option.
Wishing you well <3
Oliver Sacks still has my favourite explanation: Apple trees can spontaneously throw out unique branches that grow different apples than the rest of the tree. These branches are called ‘sports’.
Sacks saw people with autism as sports of the human race.
Interesting...didn't he have autism?
Based on what I've heard a couple people who knew him say, he hinted at it, but never said definitively.
I don’t know. I haven’t read his stuff for quite a while; I’ve kinda fallen out of touch with the field. I will say though, early in my career it was very helpful to read his views on things, he had perspective.
He had a profound respect for other human beings, and it made him a great clinician. People like this are rare but if we had more in medicine it could make a great difference.
I'm so grateful to you for writing this Pascale, and feeling incredibly fortunate to have found it as it articulates something so strongly and wonderfully. I have recently been encouraged to seek an ASD diagnosis for my wee son, and while I have known he is "different" since he was about four months old I understand his exploration of the world almost word-for-word as written. He's smart, very relational and curious, but the way he explores the world and learns is ... different. As you say.
I've been inherently suspicious of the framing of ASD as a superpower or gift, as it's hard to exist in the world when you experience things differently for the norm and it feels like "toxic positivity" in a way. But "bifurcation", as you explain it, feels like a useful and resonant concept. Thank you, thank you.
Hello, dear readers! Thank you for showing interest in my writing. I am humbled by so much support and “likes” …
Can I ask something, though?
Don’t forget that most people who read my posts are sensitive to many things (lights, sounds, clothes labels. smells, people chewing gums…. ) and that they also may be sensitive to blunt or harsh comments.
Don’t forget to be courteous.
Be sweet, kind and gentle. The world is already so harsh, violent and chaotic…
Let’s make this space a safe, quiet and happy space.
Lots of love 💜🩷💜 and thank you for your patience with me (I am a very slow writer!)
It's called being an Introvert and it's a good thing. If I were a child now, I would be labeled ASD....and I'm NOT! I'm an introvert and I have solo likes and hobbies that make me unique. I don't like being in crowds and prefer to have a few close friends....quality over quantity. I'm not a genius, but I am very "bright". I'm Normal....I'm ME. I find the extroverts trying to tell me (and others) that something is wrong with my personality is offensive. Different strokes for different folks. Everybody wants a "label" and there are parents who want an excuse for when their child doesn't conform to "the standards" of society. Maybe something is wrong with "the standards"?
Yes, I do think that there is actual autism! Those people need lots of care from infancy though adulthood. What has happened is that their care and suffering is now minimized because of people (or parents) self diagnosing (or seeking) into a category. Why must we mis-diagnose normal behavior?
Your opinion is wrong & incorrect. I’m in a household of all autistic people, some introverts and some extroverts. Autistic traits are distinct. Typically developing introverts don’t look like autistic introverts. When you say everyone wants a label you erase the experiences of people you don’t truly understand. Oh, that label often comes with a two year waiting period, multiple medical referrals, at least 4 standardized tests, multiple interviews and a whole lot of social distress and stigma like being asked to leave schools because you are a “problem”. It’s not “I don’t like crowds”. Stay in your lane.
Holy heck yes. Yikes. It’s funny I came across this after finally building the courage up to share my messy perspective on how debilitating late life dx is. I’m incredibly grateful but it is disabling and all consuming
Nothing you have said indicates that you would be diagnosed autistic and you are very loudly wrong here at a time autistic people are under attack.
It’s absurd to speak so confidently about your astoundingly common traits being autistic. No one goes “seeking” for the hell of it. It’s a debilitating process to go through later life diagnosis. I even looked into it and didn’t think I was such is the extent of societal ignorance around high masking autism.
But it answered some huge issues for me and I’m now paying the cost of a life time of suppressing autistic traits. It’s a serious issue for many 1000s women in particular. And it sure as hell doesn’t look like being an introvert.
Your "identity" is so connected to a "diagnosis" that anything said against it seems like an existential a threat to you. Maybe you need to go back to the Blue Cry echo chamber?
What a strange and unkind thing to say. I am nearly 50 years old. I wasn't in need of an autism diagnosis to give my life meaning babe. I've done plenty with my life.
And fwiw I have an actual diagnosis, much as I believe self diagnosis is completely valid. Its really a strange take to come in so confident and wrong and then be so rude. Literally nothing you have referred to is even close to autistic traits, so why would you be diagnosed? You have a shallow understanding it appears?
I completely agree that autism is a difference in brain (and body, since there are many co-occurring physical differences for ND people) developmental path. However, I don’t know that I agree with Mottron’s exact ideas…I would need to investigate more deeply. Whatever the answer is in the end, autistic people still experience a disabling existence within our typical society.
I'm with you on this. There are some people who are autistic who are very clearly disabled. My brother-in-law is one of them. He was born with the cord around his throat and lost oxygen to his brain. None of us believe that he feels any empathy whatsoever, as he has never shown signs of it. I often wonder if there needs to be a bifurcation between more traditionally "functional" autistic folks (not the right word, per se) vs the ones that are legitimatey disabled. I know a few autistic friends who get very angry when people use the "differently able" phrasing. It promotes the false idea that they could learn to be better when sometimes, like in the case of my brother-in-law and others, it is not possible.
There is the old language to describe autistic people with low support needs (Asperger’s), but it’s so riddled with nazi connotations that it’s not worth using anymore. And instead of functioning labels, most people are converting to using specific examples of support needs.
E.g. some autistic people need support with communication and use AAC devices. Neither of my children uses an AAC device, but they both have periods of time when they are non-speaking and need support and understanding. Both of my kids need support with emotional regulation and are home learners because traditional school is not designed for their nervous systems.
Because each autistic person needs different levels of support in different areas, I don’t think we can ever have meaningful “categories”.
In the end, ALL human brains are different and need different supports at different times. Some need more support at all times.
Ultimately, that's the point of the "spectrum," right? It goes to show that different people have different needs. And some people have literal brain damage, so...
One thing I can't abide by is the people who say "we're all a little autistic." Nope, definitely not. That's another way of diminishing the truth of autistic life. It's not the same.
I am a psychiatrist, and to be honest, I could not tell you the diagnostic criteria for ASD. Partially, this is due to the fact that I entered Child and Adolescent psychiatry accepting already diagnosed children in the clinic of a large medical center, and decided to learn from them in conjunction with what I had been taught. The first lesson, however, came from a nurse practitioner who said they are "special" and have "super powers." When I asked for clarification, she smiled and said, "You'll see soon enough." I quickly learned to let them sit in my chair while I sat on the couch, as we played card games and talked about "problems." These usually were about having few friends, feeling lonely at school, sometimes being bullied or made fun of, etc. We devoted a lot of time to planning "strategies" to address these issues, celebrating the accomplishments, and processing the mistakes; role-playing, laughing, high-fiving, and me passing out tissues & reassurance. I decided to attempt a group, gathering six, and we would watch short movies to stimulate discussion, or do art work with the expressive arts therapist, listen to music, or just talk. They even occasionally met outside the clinic with parental supervision. I undoubtedly enjoyed the time we spent together as much as they seemed to enjoy it, and I never, ever expected to be inspired by their creativity, their insight, and their respect for one another. Eventually, I had to leave the clinic, and I was was unsure how to tell them and how to actually make the break so I sought the direction of staff. I settled on a "transitional gift" e.g. one young girl loved a rock star that I, as a guitar player, had seen and been sent several guitar picks, so I put one on a chain for her; another boy loved military battle ships, so I got him a deck of cards with battle ships on the back, etc. I introduced them individually to their new clinician, and they looked at me with such sadness, some saying, "You can't leave," or one said, "You're my only friend." They laughed & I laughed, they cried & I cried, and I have never forgotten them. My message to my colleagues is that, we are all taught - frequently by the best and the most learned in our respective fields - but I encourage you to set the books and lectures aside and be vulnerable enough to really learn from these children & adolescents as your best teachers. Actually listen to them, and likewise their families. You will never resolve all their issues, but you will forever be a better advocate and clinician, and more importantly, a better person for having done so.
Fascinating! Ask those living with Autism! Our inner world is our safe place, rich with ideas and creativity ✨️
This is wonderful! I agree, and it's how I have viewed it since my own late diagnosis at 65- nine years ago. I am sharing this as fast and as far as I can. Thank you, Ms. Larivierre!
Psychology gets basically everything wrong and what they get right they have no idea how to treat or manage. It’s a pseudoscience responsible for more atrocities than I care to recall.
I’m curious whether the original article addresses the way this perspective could be (and has been) used to blame parents, particularly mothers, for raising their kids in such a way as to result in autism. Or if you have your own views on it.
The relief of discovering neurodevelopmental differences is that parents are not generally blamed for their children’s autism anymore. What are your thoughts?
Thank you so much for posting this. It reinforces up much of what I intuitively knew 26 years ago. Felt like a translator for my son in his “early intervention education” program in our local public school. It’s exactly this approach - that there is something wrong with a child if they aren’t typical that must be identified, treated (and cured) that is so harmful.
But at one time left-handedness was abhorrent also. At least we lost the superstitious “sinister” label, (except in eye prescription scripts).
Follow the money. The explosion of autism diagnosis (and autism service industrial complex) is tied directly to special education dollars. It’s not helping, but often hindering students in school, when implemented from this perspective. I hope one day that this will be reversed and all students will be recognized for their added value and intellectual and artistic assets they bring to our world.
"Sinister" means "Left" in Latin. Why is it superstitious?
Yes, it does. It used to be considered ‘of the devil.’ I was referring to that time in history. And those backward people as superstitious. An imperfect description.
This is entirely relatable to me! (autistic person and mother of an autistic child). We always say we have a different operating system, like Linux instead of the mainstream Windows. I recognise every point made here.
This is an amazing article. Thank you.
I couldn't love this article more. As a late-diagnosed woman, it really resonates with me.
Thank you so much :)
Someday, I hope we will evolve to a state of embracing neurodivergence as the essence of being human.
I love how understandable this overview is! You just made my autistic heart very happy <3